JIM'S STORY PART 1

Hearing and Writing the Words at Last: Jim's Story

March 2005

This is a story about Jim – my younger brother. We grew up in Vancouver, BC., with my other brother, Brian, and we were blessed to have both our parents until 1988, when our father passed away. Mom is now 82; I brought Jim and her to live with me in Kingston, Ontario in June 2000. For several years now, I have been sharing stories about Jim, who has autism, with anyone who will listen. He is a great inspiration to me and I feel I owe him everything that I have achieved.

Jim has classical autism. That diagnosis didn’t come easily – he had several diagnoses when he was young, from mental retardation to cerebral palsy. Ever since I was about 10, all I wanted to do was to find out what Jim “had” and to figure out how to “cure” it and make him normal, so he could enjoy the school dances, and skating parties, and going to university, just like Brian and me. I wanted to do research to help Jim.

As a child, Jim appeared to be essentially non-verbal. He tried very hard to say words, but they all came out pretty much the same – “unghhh” “arnghhh” – sounds that had no clear meaning. He would repeat the same sound over and over when he wanted to tell us something. He could go on for half an hour, with us guessing. When we finally got it right, he was overjoyed. He had such patience – patience I have never known in anyone else. In time, he learned to say some simple words and phrases. I remember how he would like to tell us that he recognized a song on the stereo – he would rush down to his room, check all his 45’s or LPs and find the same song and put it on the record player (often in synchrony with the song on the radio!) and say “1, 2, the same”. He was telling us that he knew that these were the same song.

Jim loved books too – our family didn’t have much money, but I remember we bought him the Funk and Wagnallis Encyclopedia – from the Dominion or one of the other chain grocery stores: 49 cents for the 1st volume and 99 cents for the next ones. They had diagrams of each item, and Jim would look at these over and over again. One day there was a documentary on icebergs on TV and we were all watching it. Jim went over to his encyclopedia and picked out the right volume and opened the page at “Icebergs” and again repeated “1, 2, the same”. Jim did not read, he knew not a single letter of the alphabet, and we had not been reading the encyclopedia to him – he simply made the connection from a drawing in a book to the photographs on TV. He was continuously surprising us. I often said, as we were growing up, that if Jim could talk, he would be far brighter than Brian and me.

When Jim was 20, I was in Basel, Switzerland doing postdoctoral research. I longed to read something in English, and went to the English bookstore, where the book “The Siege” by Clara Claiborne Park was prominently displayed. I still remember the display vividly. I picked up the book, which I still have, and read it from cover to cover in a couple of days. Soon after I started reading it, I realized that this book was “about Jim”: Jim had autism. He had all the characteristics of classical autism, except that he clearly loved us and recognized us. Or so I thought…When I wrote home sharing my findings with our Mother, she wrote back and said “No, dear, Jim has all the characteristics – all of them”. As his sister, I had simply assumed that he loved us, just as we loved him. And, I know he did – but he didn’t show it…. He didn’t know how. Reciprocal social interaction was one of his great weaknesses.

Jim wasn’t properly diagnosed until he was 35 – when there was a review of all individuals in Sheltered Workshops in BC. Ironically, a high-school friend of mine assessed Jim, and he was given an official diagnosis of classical autism. Although one might think that a diagnosis at this late age probably wouldn’t make much difference – it did! With a diagnosis, one knows where to look for information and help. And, although we realized it earlier, those who were working with Jim on a daily basis didn’t. I don’t know if it ever really made much difference to those who worked with him – they never really understood that Jim liked routines and that any departure from routine was very disruptive to him unless he was warned beforehand.

Jim never forgot promises, either. Ever. So, if something was promised, and then not delivered, he could become very upset – he wouldn’t understand why what was promised didn’t happen. He did, however, understand it when a change was discussed with him: if we told him ahead of time that plans were changed, he was extremely accepting of the change.

I think most people incorrectly assume that a person who is non-verbal doesn’t understand what another person says. We need to ensure that we all respect those who are non-verbal and offer them the same explanation that we would someone who is verbal. Despite telling all those who worked with Jim, over and over again about this, it was rare that they explained anything – and Jim would have a “tantrum” or become upset when things were not the way they usually were. Is it any wonder why he was upset? When it happens to us, we get upset – yet they shouldn’t get upset. That doesn’t make sense.

About 6 years ago, my mother and two brothers were visiting from Vancouver, and I invited a speech and language pathologist colleague of mine to have lunch with us. I wanted her to listen to Jim and see if we could somehow improve his speech. Communication is perhaps the most important gift that we have: whether it is verbal or non-verbal, the ability to tell others how we feel, what we want, who we like defines us and our relationships. Can you imagine never being able to ask for a drink of water when you are thirsty? Or telling someone about something that makes you extremely happy, joyful or sad? Not being able to share our thoughts with others makes one very lonely and alone in the world. I knew that Mom, Brian and I usually understood Jim, but I worried about how he would cope when we aren’t there to interpret. I really wanted her to say that “Yes, we can make him speak more clearly, so everyone can understand him.” I really, really wanted her to say that.

Instead, she asked me something strange – whether Jim had ever had an audiology test. I looked at her in surprise and ask “Why? Why would we have his hearing tested? He can hear a lawnmower 4 blocks away, from inside the house. He can hear an airplane – from inside the house – and runs to the window or door to see it, and tells us what kind of plane it is! He can hear – he hears everything! Including things we don’t hear.” When I again asked “Why?”, she said, because his ears are abnormal. I was stunned. I had never noticed, but she was right. They were abnormal. Shortly after Mom and Jim moved to Kingston, Jim had an appointment with the audiologist. We all went in together, in case Jim didn’t understand the instructions. After about an hour, the audiologist told us that Jim had moderate hearing loss, and probably had it all his life. I cried and I cried. We had had no idea that Jim couldn’t hear us – so when he said “unghhh” or “arnghhh”, he was simply repeating what he heard. And he repeated it and repeated it – exactly how he heard it. He understood us, but we didn’t understand him – despite the fact that he was repeating exactly what he heard. It still hurts beyond what I can say – it hurts so deeply to know that for 45 years, we didn’t know that Jim couldn’t hear us clearly, that he only probably heard the middle parts of words. You see, if you know that someone is hearing impaired, you adjust what you say, how fast you say it, and you speak slowly and clearly, with simple words. When you don’t know this, you make no adjustments – and that isn’t fair. For 45 years, we didn’t know and yet he never gave up on us.

The audiologist thought that a hearing aid might be helpful, but Jim might have a lot of trouble handling it, as it is a delicate piece of equipment. And Jim wasn’t sure that this is what he wanted – we felt it was important for him to want whatever he might eventually get to help his hearing. I should also point out, though, that Jim is a very very happy person – he is undoubtedly the happiest person I have ever known. We should all be so lucky to be so happy. Happy despite the incredible frustration he must have felt every day of his life, understanding us, and repeating what he heard, but with no-one understanding him.

The following parts of Jim’s story will seem like magic – largely because they are. Nothing was planned, yet everything happened in the right order and at the right time…

In December 2002, I was writing a research grant with some colleagues, entitled “The Healthcare Equity for Intellectually Disabled Individuals (HEIDI) Program”. One of the areas that I intimately knew was not the same for persons with developmental disabilities and “typical” individuals was access to hearing tests. I called the Canadian Hearing Society office in Kingston, explained the basis for the grant, and asked for a letter of support. The executive director was so supportive and when I went to pick the letter up, as I waited I noticed a small notice that said that someone would come to the home with examples of hearing aids, if we wanted. I spoke to the receptionist, gave her my name and contact information, and said that I would like to speak with someone about a home visit. After explaining our situation, and about Jim’s autism, we were visited by a lovely lady from the Hearing Society visited us in March 2003. Instead of bringing hearing aids, she brought something that would change all of our lives forever. She brought a couple of personal FM systems, which are small units consisting of a microphone, amplifier, a receiver and headphones. Jim was excited by this because he likes headphones a lot.

This wasn’t Jim’s first introduction to technology that might help him. Jim started using a computer about a year before the FM system was introduced to him. He had a Tonka Workshop – a set of plastic tools are placed on a workbench over the keyboard and, using a mouse, Jim would go through a program that let him make choices about what he would like to “make” and then gave instructions on how to make it, using, for example, a saw, hammer, sander, drill, Jim didn’t yet type, but he had liked tools for a long time, using them with our father, so he enjoyed the program a lot.

Jim didn’t take to the FM system immediately. Using it did not come naturally – until after about a month, we decided to use the microphone to amplify what was said on the computer or on TV by placing the microphone near the speakers. After a couple of tries, Jim was excited to use the FM system – particularly while watching TV. He would sit at the edge of his chair and listen intently. It seemed as though he was getting more out of watching TV than he ever had before. And he listened to the entire shows. And suddenly he began to tell us things – tell us about the story on TV. Until then, Jim had never told us anything. He answered questions that we phrased in such a way that he could say yes or no – or a single word would be the answer. But he never told us anything. And now he was telling us what was on TV, what was on his computer screen, he simply started talking. He wasn’t perfectly clear – he was still quite difficult to understand, but he initiated conversations. His speech did improve, and he wanted another computer game, so I got him a different Construction game. This didn’t have an overlay, so he had to manipulate the mouse a lot to play the game. He became proficient and his dexterity improved immensely. After playing that game for a few months, I noticed something new on the screen. Upon closer inspection, I realized that he had found something else in the program – and he had figured out what to do with this new part of the program! He was discovering things for himself and teaching himself!

Although Jim’s pronunciation had improved, other people still had trouble understanding him. Because so many more people would understand him if he could write what he wanted, our next task was to teach Jim to write and to read. In February, 2004, as I was shopping at Staples (which I often did and do, for office supplies for our research), I overheard one of the salesladies saying (to herself) that she should “buy one of these for my daughter”. Having eavesdropped on her private conversation, I quietly asked her “what?” and she kindly replied, one of these “things” to help her daughter learn to spell. I quickly picked one up and checked it out, and clearly this could be the beginning of writing for Jim. It was a Leap Frog Phonics Writing Desk, a small hand-held device that had large colourful letters of the alphabet, and – among other things – one could learn to spell 3-letter words. After pressing each letter, a voice would say the letter, and upon completion of the word, the voice would say the word. Jim took to it immediately, and within a few days knew 20 words. Within about 6 weeks, he knew more than 100 3-letter words, (thanks in part to JoAnne who worked with Jim 2 days a week, 6 hours a day).

Jim didn’t want to stop! He worked day and night to learn more. After about 100 3-letter words, I ran out of new words that I could define so he knew what they were! It was time to start looking into a new, more versatile device. Not everything worked, though. I explained what Jim was doing to a psychologist I had met at a meeting in Vancouver and she suggested Clicker 4 might be an appropriate program. After long delays, we finally got it and a special Intellikeys keyboard that can be configured in different ways. We set it up the same as the Leap Frog, making it a seemingly relatively easy transition for Jim. Clicker 4 didn’t work for Jim – the voice was not right and I had troubles with it.

On June 3, 2004, Jim began working with WriteOutloud, a program that a friend mentioned her non-verbal son with autism used and he was already writing long sentences! That seemed like a dream for us. It took Jim only a few days to get used to the computer and typing on the IntelliKeys keyboard. He started with the 3-letter words he had been doing, but on June 7th he was ready to write BRIAN, which he did. By June 23rd he realized the power of what he could now do and wanted to learn how to write “To Serve and Protect”. It was the beginning – a beginning that really hasn’t stopped. By June 28th, he was correcting words that he misspelled and the thirst for knowledge that he had before we started, exploded. He started copying short sentences by June 30th. He didn’t compose them himself, but he did tell us what he wanted to write about.

Late on August 5, Brian and my sister-in-law Gayle arrived from Vancouver. They knew nothing of what Jim was doing because we wanted to surprise them. We did! Jim typed “Brian is my brother” for Brian, which we have captured on videotape. Although Jim copied this, “Brian” and “is” were from memory. Jim does not understand phonics and thus all he learns is by memorizing. The morning was magical – Jim wanted to type ADAM-12, so we showed him ADAM TWELVE, since the Intellikeys keyboard does not have numbers. Although it didn’t look right, it sounded right. He was clearly disappointed, so I showed him how to do ADAM on the IntelliKeys keyboard and 12 with a regular QWERTY keyboard. He was ecstatic and immediately worked it out himself, switching from keyboard to keyboard.

While Jim was showing Brian what he could do, Carol (his speech/language pathologist) and I were discussing what Jim’s next steps should be. She suggested that he should also learn to use small letters (until then, he only used capital letters). After that, she thought, we should change the coloured letters to black, so he didn’t have the colour cues anymore, making it more typical of what he would see in print. Finally, she suggested we should switch to a QWERTY format on the IntelliKeys keyboard, before switching to a regular keyboard. She thought this transition would take about 6 months. I thought she was trying to make me feel good by saying such a “short time”.

Since we were videotaping Jim, I thought it would be good to see how he worked on a regular keyboard before this process began. We handed him the keyboard and asked him to type ADAM-12 on his regular keyboard. He did it immediately! Stunned yet again, we suggested he write To Serve and Protect – although he had to search for the letters, he was able to do this without any problems! What Carol thought would take 6 months, happened almost immediately! From then on, Jim used both keyboards, depending on what he felt like doing.

Jim continues to progress. Though it’s not easy to teach when to use capital letters, he learned to use small letters and to use capital letters at the beginning of words. He likes to copy new words from something that is written down – either on cue cards, or in a book. A few weeks ago, he went to the library with JoAnne to see if they could find something on Hawaii-Five O. They spoke to the librarian, and when she started to look something up in their computer, Jim proudly (and loudly) spelled H-A-W-A-I-I – Hawaii! JoAnne said she was so proud of him – and the librarian was clearly impressed! Jim’s self-confidence was certainly mounting.

Jim is now telling us what he wants to learn to write and he even composes his own short sentences. He talks constantly in the evenings, telling us everything he wants to write the next day. There is never even a moment when we think we’d like him to stop – never. We waited 50 years for this, and he’s just catching up on lost time. I am so happy that Mom gets to see this.

Jim is now starting to learn how to read, which is something he really wants to do. Reading is far more difficult for Jim because, remember, he types words from memory, not from phonics. But he seems to be “getting it” – he is starting with cue cards, with JoAnne – it is slow, but we can wait. After all, he waited patiently for more than 50 years to be heard and understood, and now we simply have to provide him the opportunities for each new step towards his independence.

The last two years have been similar to the magic in “Awakenings”. Jim had his first eye contact with me ever last spring – he now looks at people more and seems to benefit from eye contact. He articulates more clearly than ever, and many people now understand quite a few of his words. He practices these all the time, repeating after he hears the computer voice say a word or sentence. He is tracing letters so he can learn to write – what was so awkward for him a year ago, is changing to fluidity. He is spatially more aware: When we moved to a new house last July, Jim would move a box and, if it was too wide for a doorway, he would stop, unable to figure out how to turn it so it would go through the doorway. This is no longer a problem – he figures out all kinds of situations now.

Through all of this transition, Jim has remained cheerful and excited about life. He chooses when to use his FM system and when not to. He chooses what he wants to do during the day or evening. He helps with cooking and continues to love to vacuum (thank goodness!). He plays and “talks” with our cats. And he smiles, and he looks us in the eyes with love.

Jim is an inspiration to me – but he should also be an inspiration to all parents who have a child with autism. Jim needed one-on-one help and the opportunity to explore with the right tools. Neither my Mom nor I could give him the intensity that he needed without the tools. Jim needed the FM system, the Leap Frog and a computer program that reinforced everything he did at the keyboard. I think that using the FM system taught him the value of communication because he could now hear what was going on when people were talking together on TV and he began to tell us about what was happening. He just needed the opportunities that everyone had when we went to school. After all, where would we be without 12 years of intensive intervention? Some of us needed more than that! I needed 19 years! Jim just started late because the doors were closed to him when he was 6. They’re open now and they will not be shut again.

Thank you, Jim – for giving us all hope that one day all people will be respected equally; that one day, those who need the extra help, will be given it without hesitation. Thank you for being you.

And now, full swing – my own research into the Genetics of Autism Spectrum Disorders continues, but we have added some new studies. We are beginning a study of other adults with autism, to see whether a personal FM system can augment their communication skills. And, then we hope to try to teach literacy skills to those who are interested. Since there are so few interventions for adults with autism, we hope that the example of Jim will provide new avenues for providing the tools to enjoy that which we all take for granted – the ability to communicate.